› Forums › General Melanoma Community › Experience with Zelboraf and brain tumors
- This topic has 36 replies, 4 voices, and was last updated 13 years, 4 months ago by
Rik.
- Post
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- October 6, 2012 at 8:07 am
Dear all,
Four years ago a melanoma was found on the back of my brother. Fortunately, they can be surgically remove and no metastases were found.
My brother is now 31 years old and father of a beautiful daughter of one year.
Dear all,
Four years ago a melanoma was found on the back of my brother. Fortunately, they can be surgically remove and no metastases were found.
My brother is now 31 years old and father of a beautiful daughter of one year.
Unfortunately, in April of this year, they found a metastasis. This time in his head. Fortunately, they could again surgically remove the tumor. The tumor was located on the outside of his brains. Again there were no metastases found after the scans.
Unfortunately, it ran all wrong from than. My brother showed a bacterial infection to have walked in the operation; meningitis. He went into a coma by the meningitis. Fortunately he awoke, but he had some damages in his brains and physical he was bad at that moment too. He had to rehabilitate. He was working on that for the last two months in the rehabilitioncentre.
The result of a routine MRI came last Friday, this revealed that again metastases were found in his head, this time at 3 places. We all did not expected this. This week we had many conversations in the hospital, they can not surgically remove the tumor because they are in the brains. Radiation is dangerous and not recommended by the neurologist. The last remaining option is medication, Zelboraf. The hospital, here in the Netherlands, is not very keen on it. They indicate that the probability that Zelboraf works on brain tumors is 40 percent and find the side for my brother too dangerous. Zelboraf in the Netherlands is only recently officially approved drug, but data regarding Zelboraf and the effect on brain tumors is very limited the oncologist told us. We are now busy deepen what Zelboraf can do for my brother and whether this without many nasty side effects. If Zelboraf can extend my brothers life with months (they diagnosed him to life for 6 – 9 months) this would be so beautiful. His daughter is 1 year old, and every month they can life together (in a reasonable way) together is so important for all of us.
Please let me know if anyone has experience with Zelboraf with a brain tumor and what the effects have been. My brother is indeed in a bad condition by the complications of the previous operation. We want to exclude that Zelboraf damages his life even more, without the chance that Zelboraf works for him is very large.
Thanks in advance! All comments are welcome. This is so important for my brother!
Kind regards,
Rik
- Replies
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- October 6, 2012 at 11:51 pm
I am so sorry that your brother has melanoma and that he has had such a difficult time of it in recent months. I do hope he is able to regain his strength soon. My brother, too, is Stage IV with brain mets and he is taking Zelboraf.
Before your brother can even think about Zelboraf, his tumor must be tested to determine if it has the BRAF mutation. That test takes 2 or 3 weeks here in the States. Zelboraf only works on tumors that have the right mutation. And it only works in 50% of the people who do have the mutation. The good news is that, unlike most types of chemotherapy, it is specific for melanoma so it has fewer side effects than most chemo. As always, different people have different side effects, but Zelboraf can be effective against melanoma without severe side effects, so it was the treatment my brother chose.
Zelboraf has never been tested on people with brain mets. Anyone with brain mets was excluded from the clinical trials. So nobody knows if Zelboraf works in the brain or not. Now that Zelboraf has been FDA approved, people with brain mets are trying it. It seems to shrink brain tumors in some people but not in other people. There is now a large clinical trial being conducted to determine if Zelboraf works in the brain.
My brother has been on Zelboraf for 2 months. During that time, the tumors in his body shrank by 50%. The original tumors in his brain are dead or dormant BUT that could be partly or completely the result of the whole brain radiation he got before he stared Zelboraf. He did develop 2 new tumors in his brain during the last 2 months (one ~ 1cm, one very small) that were treated with stereotactic radiosurgery (also called "gamma knife" or "cyber knife") this week.
It sounds like you are saying that your brother's doctors do not want to treat his brain mets. No surgery, no radiation, no Zelboraf. (By the way, other types of chemo work in less than 15% of brain mets cases and the side effects can be very bad. There is no "good" alternative to Zelboraf.) I don't know much about the European health care system. Can you get a second opinion? Can you request a consultation with a radiation oncologist and ask about whole brain radiation and about using Zelboraf for the body mets and stereotactic radiosurgery for the brain mets as my brother is doing?
Good for you for doing some research and for reaching out for help. You must care about your brother very much.
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- October 7, 2012 at 12:41 pm
Dear Pow,
Thank you for your clear and quick response! Because we have to make a decision in two weeks, every day counts now.
I forgot to tell that my brother has the BRAF mutation, they tested this after the first brain surgery (about 4 months ago). The reason that the doctor says Zelboraf might not be a good thing for my brother, is that my brother is in a bad condition cause of all the complications after this first surgery (the coma caused by the meningitis). It is hard to tell, but my brother has (caused by this complications) some brain damage. That's why he is/was rehabilitating. But the doctor forgets my brother is really aware of things happening around him and communicates with us pretty good. If my brother couldn't communicate with us at the moment, it would be a different story for us. So it's really a complicated story now; we have to convince the doctor that my brother has advantages of Zelboraf. That is why I want to hear your experiences with Zelboraf on brain mets.
Another small addition; the latest pet-scan didn't showed any mets in other parts of his body. So the only reason (for now) we are considering Zelboraf is for the brain mets.
Pow, what side-effects did your brother experienced from Zelboraf till now?
A second opinion is an option for us. The health care system in the Netherlands allows that. My brother is in the best cancer hospital in the Netherlands, but it could be an option when we are really convinced Zelboraf is the right thing now. There are no other options than Zelboraf unfortunately; radiation would damage my brother even more, so the quality of life will be even more bad.
Good that you do the same for your brother. It is so hard to see your brother like this. I'm sure you have the same feeling.
Thank you so much for sharing the experiences with Zelboraf!
-
- October 8, 2012 at 1:58 am
Hi, Rik-
As far as we can tell, my brother has experienced no significant side effects from Zelboraf and he's been taking it for more than 2 months. He never got the rash that many people get. In the cases I have heard of, if the patient does experience side effects, the doctors can reduce or stop the Zelboraf for a week or two and then start again gradually. Usually the side effects are not so bad then.
I am not a doctor, and other people here know more about melanoma than I do. But I do find it surprising that your brother has had 4 brain mets and absolutely nothing was found in the rest of his body. If that is true, it's wonderful. If his tumors are only in the brain, it would be nice to be able to treat only the brain (via radiation) rather than take Zelboraf which effects the whole body and only perhaps will work in the brain.
I understand that whole brain radiation would damage your brother's brain even more than it is now. My brother does have some brain damage from WBR. However, stereotactic radiosurgery (also called "SRS", "gamma knife" or "cyber knife" surgery) does not damage the brain. The radiation is only focused on the one small spot where the tumor is. If SRS is possible for your brother, that might be a good starting point. Zelboraf can be used later, if necessary. You do not say where your brother is being treated, but you might want to contact some doctors in the Netherlands who do SRS. Can you contact DR Buis, OWM Meijer, R van den Berg, FJ Lagerwaard; Joost Bot, BJ Slotman, WP Vandertop Departments of Neurosurgery, Radiation Oncology and Neuroradiology, VU University Medical Center, Amsterdam, The Netherlands? At the very least, be absolutely certain to consult a radiation oncologist who has extensive experience with brain melanoma and with SRS.
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- October 8, 2012 at 5:46 pm
The docter said brain radiation is now option, cause the tumors returned very quick after the initial sugery in April. Her argument is that with radiosurgery (gamma knife) will maybe remove the tumors (for a bit) but there will be always some cells that the can not remove, so the tumors will return again.
I think radiation will have even a bigger impact on my brothers body, he is not in a good condition at the moment; he can not walk and have to be moved by an ambulance to the hospital. He needs care 24 hours a day.
Maybe a second opionion is an option.But I first wanna hear all your experiences with Zelboraf, so we are sure that this is something he can use at the moment. For now I'm getting more and more convinced, after your stories, that Zelboraf is the right thing to do right now.
-
- October 8, 2012 at 5:46 pm
The docter said brain radiation is now option, cause the tumors returned very quick after the initial sugery in April. Her argument is that with radiosurgery (gamma knife) will maybe remove the tumors (for a bit) but there will be always some cells that the can not remove, so the tumors will return again.
I think radiation will have even a bigger impact on my brothers body, he is not in a good condition at the moment; he can not walk and have to be moved by an ambulance to the hospital. He needs care 24 hours a day.
Maybe a second opionion is an option.But I first wanna hear all your experiences with Zelboraf, so we are sure that this is something he can use at the moment. For now I'm getting more and more convinced, after your stories, that Zelboraf is the right thing to do right now.
-
- October 8, 2012 at 5:46 pm
The docter said brain radiation is now option, cause the tumors returned very quick after the initial sugery in April. Her argument is that with radiosurgery (gamma knife) will maybe remove the tumors (for a bit) but there will be always some cells that the can not remove, so the tumors will return again.
I think radiation will have even a bigger impact on my brothers body, he is not in a good condition at the moment; he can not walk and have to be moved by an ambulance to the hospital. He needs care 24 hours a day.
Maybe a second opionion is an option.But I first wanna hear all your experiences with Zelboraf, so we are sure that this is something he can use at the moment. For now I'm getting more and more convinced, after your stories, that Zelboraf is the right thing to do right now.
-
- October 8, 2012 at 1:58 am
Hi, Rik-
As far as we can tell, my brother has experienced no significant side effects from Zelboraf and he's been taking it for more than 2 months. He never got the rash that many people get. In the cases I have heard of, if the patient does experience side effects, the doctors can reduce or stop the Zelboraf for a week or two and then start again gradually. Usually the side effects are not so bad then.
I am not a doctor, and other people here know more about melanoma than I do. But I do find it surprising that your brother has had 4 brain mets and absolutely nothing was found in the rest of his body. If that is true, it's wonderful. If his tumors are only in the brain, it would be nice to be able to treat only the brain (via radiation) rather than take Zelboraf which effects the whole body and only perhaps will work in the brain.
I understand that whole brain radiation would damage your brother's brain even more than it is now. My brother does have some brain damage from WBR. However, stereotactic radiosurgery (also called "SRS", "gamma knife" or "cyber knife" surgery) does not damage the brain. The radiation is only focused on the one small spot where the tumor is. If SRS is possible for your brother, that might be a good starting point. Zelboraf can be used later, if necessary. You do not say where your brother is being treated, but you might want to contact some doctors in the Netherlands who do SRS. Can you contact DR Buis, OWM Meijer, R van den Berg, FJ Lagerwaard; Joost Bot, BJ Slotman, WP Vandertop Departments of Neurosurgery, Radiation Oncology and Neuroradiology, VU University Medical Center, Amsterdam, The Netherlands? At the very least, be absolutely certain to consult a radiation oncologist who has extensive experience with brain melanoma and with SRS.
-
- October 8, 2012 at 1:58 am
Hi, Rik-
As far as we can tell, my brother has experienced no significant side effects from Zelboraf and he's been taking it for more than 2 months. He never got the rash that many people get. In the cases I have heard of, if the patient does experience side effects, the doctors can reduce or stop the Zelboraf for a week or two and then start again gradually. Usually the side effects are not so bad then.
I am not a doctor, and other people here know more about melanoma than I do. But I do find it surprising that your brother has had 4 brain mets and absolutely nothing was found in the rest of his body. If that is true, it's wonderful. If his tumors are only in the brain, it would be nice to be able to treat only the brain (via radiation) rather than take Zelboraf which effects the whole body and only perhaps will work in the brain.
I understand that whole brain radiation would damage your brother's brain even more than it is now. My brother does have some brain damage from WBR. However, stereotactic radiosurgery (also called "SRS", "gamma knife" or "cyber knife" surgery) does not damage the brain. The radiation is only focused on the one small spot where the tumor is. If SRS is possible for your brother, that might be a good starting point. Zelboraf can be used later, if necessary. You do not say where your brother is being treated, but you might want to contact some doctors in the Netherlands who do SRS. Can you contact DR Buis, OWM Meijer, R van den Berg, FJ Lagerwaard; Joost Bot, BJ Slotman, WP Vandertop Departments of Neurosurgery, Radiation Oncology and Neuroradiology, VU University Medical Center, Amsterdam, The Netherlands? At the very least, be absolutely certain to consult a radiation oncologist who has extensive experience with brain melanoma and with SRS.
-
- October 7, 2012 at 12:41 pm
Dear Pow,
Thank you for your clear and quick response! Because we have to make a decision in two weeks, every day counts now.
I forgot to tell that my brother has the BRAF mutation, they tested this after the first brain surgery (about 4 months ago). The reason that the doctor says Zelboraf might not be a good thing for my brother, is that my brother is in a bad condition cause of all the complications after this first surgery (the coma caused by the meningitis). It is hard to tell, but my brother has (caused by this complications) some brain damage. That's why he is/was rehabilitating. But the doctor forgets my brother is really aware of things happening around him and communicates with us pretty good. If my brother couldn't communicate with us at the moment, it would be a different story for us. So it's really a complicated story now; we have to convince the doctor that my brother has advantages of Zelboraf. That is why I want to hear your experiences with Zelboraf on brain mets.
Another small addition; the latest pet-scan didn't showed any mets in other parts of his body. So the only reason (for now) we are considering Zelboraf is for the brain mets.
Pow, what side-effects did your brother experienced from Zelboraf till now?
A second opinion is an option for us. The health care system in the Netherlands allows that. My brother is in the best cancer hospital in the Netherlands, but it could be an option when we are really convinced Zelboraf is the right thing now. There are no other options than Zelboraf unfortunately; radiation would damage my brother even more, so the quality of life will be even more bad.
Good that you do the same for your brother. It is so hard to see your brother like this. I'm sure you have the same feeling.
Thank you so much for sharing the experiences with Zelboraf!
-
- October 7, 2012 at 12:41 pm
Dear Pow,
Thank you for your clear and quick response! Because we have to make a decision in two weeks, every day counts now.
I forgot to tell that my brother has the BRAF mutation, they tested this after the first brain surgery (about 4 months ago). The reason that the doctor says Zelboraf might not be a good thing for my brother, is that my brother is in a bad condition cause of all the complications after this first surgery (the coma caused by the meningitis). It is hard to tell, but my brother has (caused by this complications) some brain damage. That's why he is/was rehabilitating. But the doctor forgets my brother is really aware of things happening around him and communicates with us pretty good. If my brother couldn't communicate with us at the moment, it would be a different story for us. So it's really a complicated story now; we have to convince the doctor that my brother has advantages of Zelboraf. That is why I want to hear your experiences with Zelboraf on brain mets.
Another small addition; the latest pet-scan didn't showed any mets in other parts of his body. So the only reason (for now) we are considering Zelboraf is for the brain mets.
Pow, what side-effects did your brother experienced from Zelboraf till now?
A second opinion is an option for us. The health care system in the Netherlands allows that. My brother is in the best cancer hospital in the Netherlands, but it could be an option when we are really convinced Zelboraf is the right thing now. There are no other options than Zelboraf unfortunately; radiation would damage my brother even more, so the quality of life will be even more bad.
Good that you do the same for your brother. It is so hard to see your brother like this. I'm sure you have the same feeling.
Thank you so much for sharing the experiences with Zelboraf!
-
- October 6, 2012 at 11:51 pm
I am so sorry that your brother has melanoma and that he has had such a difficult time of it in recent months. I do hope he is able to regain his strength soon. My brother, too, is Stage IV with brain mets and he is taking Zelboraf.
Before your brother can even think about Zelboraf, his tumor must be tested to determine if it has the BRAF mutation. That test takes 2 or 3 weeks here in the States. Zelboraf only works on tumors that have the right mutation. And it only works in 50% of the people who do have the mutation. The good news is that, unlike most types of chemotherapy, it is specific for melanoma so it has fewer side effects than most chemo. As always, different people have different side effects, but Zelboraf can be effective against melanoma without severe side effects, so it was the treatment my brother chose.
Zelboraf has never been tested on people with brain mets. Anyone with brain mets was excluded from the clinical trials. So nobody knows if Zelboraf works in the brain or not. Now that Zelboraf has been FDA approved, people with brain mets are trying it. It seems to shrink brain tumors in some people but not in other people. There is now a large clinical trial being conducted to determine if Zelboraf works in the brain.
My brother has been on Zelboraf for 2 months. During that time, the tumors in his body shrank by 50%. The original tumors in his brain are dead or dormant BUT that could be partly or completely the result of the whole brain radiation he got before he stared Zelboraf. He did develop 2 new tumors in his brain during the last 2 months (one ~ 1cm, one very small) that were treated with stereotactic radiosurgery (also called "gamma knife" or "cyber knife") this week.
It sounds like you are saying that your brother's doctors do not want to treat his brain mets. No surgery, no radiation, no Zelboraf. (By the way, other types of chemo work in less than 15% of brain mets cases and the side effects can be very bad. There is no "good" alternative to Zelboraf.) I don't know much about the European health care system. Can you get a second opinion? Can you request a consultation with a radiation oncologist and ask about whole brain radiation and about using Zelboraf for the body mets and stereotactic radiosurgery for the brain mets as my brother is doing?
Good for you for doing some research and for reaching out for help. You must care about your brother very much.
-
- October 6, 2012 at 11:51 pm
I am so sorry that your brother has melanoma and that he has had such a difficult time of it in recent months. I do hope he is able to regain his strength soon. My brother, too, is Stage IV with brain mets and he is taking Zelboraf.
Before your brother can even think about Zelboraf, his tumor must be tested to determine if it has the BRAF mutation. That test takes 2 or 3 weeks here in the States. Zelboraf only works on tumors that have the right mutation. And it only works in 50% of the people who do have the mutation. The good news is that, unlike most types of chemotherapy, it is specific for melanoma so it has fewer side effects than most chemo. As always, different people have different side effects, but Zelboraf can be effective against melanoma without severe side effects, so it was the treatment my brother chose.
Zelboraf has never been tested on people with brain mets. Anyone with brain mets was excluded from the clinical trials. So nobody knows if Zelboraf works in the brain or not. Now that Zelboraf has been FDA approved, people with brain mets are trying it. It seems to shrink brain tumors in some people but not in other people. There is now a large clinical trial being conducted to determine if Zelboraf works in the brain.
My brother has been on Zelboraf for 2 months. During that time, the tumors in his body shrank by 50%. The original tumors in his brain are dead or dormant BUT that could be partly or completely the result of the whole brain radiation he got before he stared Zelboraf. He did develop 2 new tumors in his brain during the last 2 months (one ~ 1cm, one very small) that were treated with stereotactic radiosurgery (also called "gamma knife" or "cyber knife") this week.
It sounds like you are saying that your brother's doctors do not want to treat his brain mets. No surgery, no radiation, no Zelboraf. (By the way, other types of chemo work in less than 15% of brain mets cases and the side effects can be very bad. There is no "good" alternative to Zelboraf.) I don't know much about the European health care system. Can you get a second opinion? Can you request a consultation with a radiation oncologist and ask about whole brain radiation and about using Zelboraf for the body mets and stereotactic radiosurgery for the brain mets as my brother is doing?
Good for you for doing some research and for reaching out for help. You must care about your brother very much.
-
- October 7, 2012 at 2:22 am
I have been on zelboraf for brain mets for the last 6 weeks. I had my scan this past Wed and was told that 2 stayed stable (both of these were bleeding 2 months ago and are still absobing the blood), and the rest have either shrunk or can only see on the scan because they know from the last scan where they were. I had 3 of the with SRS radiation in the past but all 3 had bled so they really didn't want to do more radiation because of my reactions. I also had 1 crainactormy.
This all started Oct 4th of last year. I am having side effects that have caused the Dr to reduce how much I have to taken but he is hoping in a month to raise the amount. They are trying to figure out the interactions of a few of my medicines and the Dr is changing just one thing at a time.
Originally I was in a zelboraf trial for brain mets and it also allowed people to have also in their spinal fluid. I went through FDA instead because they were basing the braf on a test from 2 years ago, but after 2 weeks they decided that they needed to re-do the biopsy and was having to mail it to California. My Dr decided that this was wasting time since their was personally no difference for me since my insurance will cover the medication. My Dr told me that 50% of people have the braf and that 50% of them respond to the drug.
It doesn't sound like he has been given any other options so he should ask them to try this. There are trials out there where they do a combo with braf and MEK but you have to have brain mets that have been stable. Most who have brain mets don't have time to wait 3 months to see what will happen.
Good luck,
Linda
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- October 7, 2012 at 12:57 pm
Dear Linda,
Sorry to hear that you got brain mets too. You sound so strong!
It is very positive to hear that the last scans made clear that 2 mets stayed stable and the other once shrunk! May I ask how big your 2 stabilized mets are? My brother has 3 mets in his brains: 2 grown in aprox. 2 months to 1,5 cm. and 1 smaller mets.
Can you also tell what side-effects you experienced while you where on the Zelfboraf trial?
We did not heard about MEK before, do you have a link where I can find more information about that? If you don't have it, we will ask the oncologist.
Thank you for answering Linda. I hope all the best for you! It sounds your treatment is very heavy, but still you got so many courage to talk about this. Very admirable!
Rik
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- October 7, 2012 at 12:57 pm
Dear Linda,
Sorry to hear that you got brain mets too. You sound so strong!
It is very positive to hear that the last scans made clear that 2 mets stayed stable and the other once shrunk! May I ask how big your 2 stabilized mets are? My brother has 3 mets in his brains: 2 grown in aprox. 2 months to 1,5 cm. and 1 smaller mets.
Can you also tell what side-effects you experienced while you where on the Zelfboraf trial?
We did not heard about MEK before, do you have a link where I can find more information about that? If you don't have it, we will ask the oncologist.
Thank you for answering Linda. I hope all the best for you! It sounds your treatment is very heavy, but still you got so many courage to talk about this. Very admirable!
Rik
-
- October 7, 2012 at 12:57 pm
Dear Linda,
Sorry to hear that you got brain mets too. You sound so strong!
It is very positive to hear that the last scans made clear that 2 mets stayed stable and the other once shrunk! May I ask how big your 2 stabilized mets are? My brother has 3 mets in his brains: 2 grown in aprox. 2 months to 1,5 cm. and 1 smaller mets.
Can you also tell what side-effects you experienced while you where on the Zelfboraf trial?
We did not heard about MEK before, do you have a link where I can find more information about that? If you don't have it, we will ask the oncologist.
Thank you for answering Linda. I hope all the best for you! It sounds your treatment is very heavy, but still you got so many courage to talk about this. Very admirable!
Rik
-
- October 7, 2012 at 2:22 am
I have been on zelboraf for brain mets for the last 6 weeks. I had my scan this past Wed and was told that 2 stayed stable (both of these were bleeding 2 months ago and are still absobing the blood), and the rest have either shrunk or can only see on the scan because they know from the last scan where they were. I had 3 of the with SRS radiation in the past but all 3 had bled so they really didn't want to do more radiation because of my reactions. I also had 1 crainactormy.
This all started Oct 4th of last year. I am having side effects that have caused the Dr to reduce how much I have to taken but he is hoping in a month to raise the amount. They are trying to figure out the interactions of a few of my medicines and the Dr is changing just one thing at a time.
Originally I was in a zelboraf trial for brain mets and it also allowed people to have also in their spinal fluid. I went through FDA instead because they were basing the braf on a test from 2 years ago, but after 2 weeks they decided that they needed to re-do the biopsy and was having to mail it to California. My Dr decided that this was wasting time since their was personally no difference for me since my insurance will cover the medication. My Dr told me that 50% of people have the braf and that 50% of them respond to the drug.
It doesn't sound like he has been given any other options so he should ask them to try this. There are trials out there where they do a combo with braf and MEK but you have to have brain mets that have been stable. Most who have brain mets don't have time to wait 3 months to see what will happen.
Good luck,
Linda
-
- October 7, 2012 at 2:22 am
I have been on zelboraf for brain mets for the last 6 weeks. I had my scan this past Wed and was told that 2 stayed stable (both of these were bleeding 2 months ago and are still absobing the blood), and the rest have either shrunk or can only see on the scan because they know from the last scan where they were. I had 3 of the with SRS radiation in the past but all 3 had bled so they really didn't want to do more radiation because of my reactions. I also had 1 crainactormy.
This all started Oct 4th of last year. I am having side effects that have caused the Dr to reduce how much I have to taken but he is hoping in a month to raise the amount. They are trying to figure out the interactions of a few of my medicines and the Dr is changing just one thing at a time.
Originally I was in a zelboraf trial for brain mets and it also allowed people to have also in their spinal fluid. I went through FDA instead because they were basing the braf on a test from 2 years ago, but after 2 weeks they decided that they needed to re-do the biopsy and was having to mail it to California. My Dr decided that this was wasting time since their was personally no difference for me since my insurance will cover the medication. My Dr told me that 50% of people have the braf and that 50% of them respond to the drug.
It doesn't sound like he has been given any other options so he should ask them to try this. There are trials out there where they do a combo with braf and MEK but you have to have brain mets that have been stable. Most who have brain mets don't have time to wait 3 months to see what will happen.
Good luck,
Linda
-
- October 7, 2012 at 1:44 pm
HI Rik,
My husband has 11 brain tumors, has been on Zelboraf for 4 mos, has had 2 MRI's & both show all tumors shrinking! He has minimal side effects, almost zero at this point. The first few wks he had severe sun sensitivity, then after 6 weeks his lab work of the liver was high, so he was off for 2 wks, but then back on lower dose. He is doing great, feels great! SO there IS hope!! Zelboraf DOES CROSS BLOOD BRAIN BARRIER!! I hope your brother can try out this amazing targeted therapy. Best of luck to you and your family! Stay strong!
Kelly
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- October 8, 2012 at 5:53 pm
Sorry to hear that your brother has so much brain tumors Kelly. But how great is it that Zelboraf works for your husband! That is really great to hear. Minimal side effects and shrinking tumors!
Please people, keep sharing your experience with Zelboraf! It will help us make the decision! Positive or negative experiences, are both welcome!
Thanks Kelly for sharing! I hope you can still be so happy about Zelboraf for a long long time..!
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- October 8, 2012 at 5:53 pm
Sorry to hear that your brother has so much brain tumors Kelly. But how great is it that Zelboraf works for your husband! That is really great to hear. Minimal side effects and shrinking tumors!
Please people, keep sharing your experience with Zelboraf! It will help us make the decision! Positive or negative experiences, are both welcome!
Thanks Kelly for sharing! I hope you can still be so happy about Zelboraf for a long long time..!
-
- October 8, 2012 at 5:53 pm
Sorry to hear that your brother has so much brain tumors Kelly. But how great is it that Zelboraf works for your husband! That is really great to hear. Minimal side effects and shrinking tumors!
Please people, keep sharing your experience with Zelboraf! It will help us make the decision! Positive or negative experiences, are both welcome!
Thanks Kelly for sharing! I hope you can still be so happy about Zelboraf for a long long time..!
-
- October 7, 2012 at 1:44 pm
HI Rik,
My husband has 11 brain tumors, has been on Zelboraf for 4 mos, has had 2 MRI's & both show all tumors shrinking! He has minimal side effects, almost zero at this point. The first few wks he had severe sun sensitivity, then after 6 weeks his lab work of the liver was high, so he was off for 2 wks, but then back on lower dose. He is doing great, feels great! SO there IS hope!! Zelboraf DOES CROSS BLOOD BRAIN BARRIER!! I hope your brother can try out this amazing targeted therapy. Best of luck to you and your family! Stay strong!
Kelly
-
- October 7, 2012 at 1:44 pm
HI Rik,
My husband has 11 brain tumors, has been on Zelboraf for 4 mos, has had 2 MRI's & both show all tumors shrinking! He has minimal side effects, almost zero at this point. The first few wks he had severe sun sensitivity, then after 6 weeks his lab work of the liver was high, so he was off for 2 wks, but then back on lower dose. He is doing great, feels great! SO there IS hope!! Zelboraf DOES CROSS BLOOD BRAIN BARRIER!! I hope your brother can try out this amazing targeted therapy. Best of luck to you and your family! Stay strong!
Kelly
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